A new push for health data rights
Summary: A coalition of health IT reformers today offers a Bill of Heath Data Rights aimed at moving the heart of the health IT debate away from doctors and insurance companies, toward patients.
A coalition of health IT reformers today offers a Bill of Heath Data Rights aimed at moving the heart of the health IT debate away from doctors and insurance companies, toward patients.
This is the brainchild of former Google Health executive Adam Bosworth and Patientslikeme co-founder James Heywood. My copy was forwarded by David Kibbe.
The actual proposal is postcard simple:
In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. All people:
- Have the right to their own health data.
- Have the right to know the source of each health data element.
- Have the right to take possession of a complete copy of their individual health data, without delay, at minimal or no cost. If records exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
- Have the right to share their health data with others as they see fit.
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.
The expected reaction from the industry is "yeah, but." Yeah, but it's not that simple. Yeah, but most people don't care. Yeah, but how do you express that in software.
The hope is that the principles behind HIPAA can be maintained while the costs of HIPAA, and the use of it as a smokescreen for luddism by the health IT industry, can be foregone.
That's a big hope for such a short document.
I'm afraid that if this became part of some law passed by Congress it certainly would become a new HIPAA law. But if NCHIT David Blumenthal can convince the President to make this part of an executive order, something that exists in spirit and is defined on-the-fly, it might be worthwhile.
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Talkback
Yeah, but keep government out of it
But, I also don't want the government involved in managing or creating a national medical records storage system. That's another layer of big brother that we can do without. Congress can pass rules and regulations for maintaining health records, but part of that regulation should be that government will have nothing to do with that maintenance.
Paranoia about the government
reason.
It's about as inaccurate as the paranoid fear of
government too many of us have.
There's a great scene in the "John Adams" mini-
series where Paul Giamatti, as an aged Adams, is
shown this picture in 1825 and goes ballistic,
telling artist Benjamin Trumbull "we were never
in the room at the same time."
This idea that the Constitution calls for a weak
government, or that government is our enemy, is
equally ridiculous. It's also dangerous.
The opposite of a strong government is not
freedom. It's anarchy.
"Paranoia" about the Government...
Paranoia indeed!
In some ways you are right
people with contempt for government, the
inevitable result is contemptible government.
But that is not always true. There have been
many government programs down through the years
that have been both well-run and popular.
Those who ignore the facts are letting their
ideology trump their common sense.
I can easily get my information
I'm having a gall bladder out tomorrow. There was
no problem getting a copy of the lab work that
was started on Friday, or a copy of the EKG strip.
As far as "government medicine" is concerned it is
also simple to get records or data. Had a CT and
walked out with the CT on a CD, which Osirix
handles with ease.
The key? You actually have to ask for the report or
data files. And most people don't.
Sticks are cheap
a $10 stick and keep it on your keyring,
protected by as much encryption as you might
like.
When it's a PHR -- which belongs to you -- your
legal rights in this are absolute.
When it's an EMR -- which belongs to the
hospital or doctor as your custodian -- it's
dicier. You have to prove your identity, or
approve the transfer.
In either case it's not as difficult as critics
make out. The problem is a lack of open
standards and plug-and-play in the EMR business.
RE: A new push for health data rights
HIPPA has allowed MORE access to our private medical records by "disinvolved" entities than ever before.
And when you request a medical record are you SURE you are getting it? ALL of it? Uh uh. Not if the doctor or institution decides that part of your medical record isn't subject to HIPAA.
Doctors can make personal notations about you that never get released as part of your medical records. Institutions can withold part of your procedure results from you if they so choose.
As a for instance, a recent sleep study at Mayo Clinic. The sleep doctor was VERY condescending (to be polite) and NOT AT ALL of the calibre you expect at Mayo Clinic. When a copy of the sleep study results were requested by the patient, a one page printout and a paragraph of dictation were provided. When a copy of the full scored data summary report w/condensed graphs were requested the patient was told they were not able to produce such a document. When a copy of a CD/DVD of the full study was requested the patient was advised it would be sent to an accredited sleep doctor of the patient's choice BUT it would NOT be sent to the patient.
Have you ever tried to sit on your hospital bed and read your hospital chart?? Yeah, right! Don't get caught by hospital staff doing so!
Back to sleep apnea. The software to download the data from your CPAP device is available only to medical professionals due to FDA requirements. The patient's access to that data via the device itself is restricted except upon doctor's order. Why? Ask a sleep professional. Patients are not considered intelligent enough to understand the data. Sleep apnea patients are not considered intelligent enough to be educated to monitor and make minor changes to their CPAP therapy. Evidently apnea patients are not as intelligent as diabetic patients who CAN be educated to monitor and administer to their own needs.
Its simply a matter of the sleep profession NOT wanting to provide the education and training to apnea patients that the medical profession provides for diabetics.
Sleep apnea patients are not as intelligent as diabetics in the eyes of the medical profession.